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Bone mets - please join in

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Re: Bone mets - please join in

good morning ladies,well yesterday i had to get my results of my pet/ct scan.sat in the waiting area like a shivering jelly ,wondering what oncologist was going to say.after half an hour delay i was called in and im still in shock but very pleased to say that im completely clear of cancer.the area in my sacrum didnt even highlight this time and im clear every where else. he gave me a copy of the report and im glad about that as i sat there in complete shock (think i had my mouth open all the time)and came out still gob smacked.he dosent want to see me for 6 months then i will have a scan just to check up on things.so im over the moon.its happy days here still cant believe it.carolyn do you think the snail wanted to be painted, i think that snail has big plans to go to glastonbury lol.take care love coreyxx

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Dear Carolyn
I was feeling very depressed with side effects of everolimus. You made me laugh so much depression vanished like magic. Imagine a snail ramp show in your garden and lunch party of the mice . thanks to you and your hubby
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 Oh Carolyn - you are a tonic! You made me laugh out loud!

 

Hugs. Barton.x

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Hiya suze
My sis worked in a school too ..the dreaded ofsted visit ..stress to all staff but sure it will be fine and it will take yr mind off c for a day or too !!
Yep Barton only "posh" snail's in our garden now ...think there is already a queue forming for the designer look !! Ha ha .
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Colour-coordinated snails! Is that the latest fashion now - snail catwalk, here we come! Great, Carolyn! Congratulate hubby for me - a great invention.

 

Hugs. Barton.x

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Thank you Carolyn. I needed a laugh. Feeling v emotional today, receiving lots of hugs and kisses from.colleagues. didn't sleep well, then we got the call. Ofsted are in tomorrow and possibly Thursday. Just what I needed more stress. Have had bath and lying with leg up. Fingers crossed we'll pass tomorrow and we can celebrate Thursday. 

Keep the funnies coming. I'll share some of our lovely children's funny quotes one day. X

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Hubs is an avid gardener but colour matching snails to his fence is a bit extreme !! Ha ha
Also, he bought a few boxes of lawn food and gave our son a box for his garden ....son said that within 20 minutes of sprinkling it ....every mouse in the area was out on his lawn eating the food ...my reply " well it does say on the box "animal friendly" !! His reply "doesn't mean a free lunch" !

I Apologise ..this isn't anything to do with bone Mets but hope at least it raised a smile to your day !!
Xxxx
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☺Carolyn

That's really funny. Poor chap covered with green paint. I couldn't stop laughing trying to visualise the green snail crawling by .
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Hahaha! That's hilarious Carolyn!
Hugs Janette xx
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....and he's been to specsavers !!👓
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Good morning
Hope everyone is well.
Something to make u chuckle ..hubby has been painting the garden fence panels ..Forrest green ...this morning on the path is a snail ...you guessed ..green ..must have got in the way of the paint brush !!
Laughter is the best medicine !!
Hugs xxx
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Hiya jeanette
Welcome back from your weekend break ..yes good to get away from routine.
We have had grandkids and a dog here so the house looks like a war zone !! But I'm not worried too much. Just been over for McDonalds ...yum and I've just finished off grandsons Easter egg he didn't want ...so oink oink again 🐷🐷🐷
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Hi ladies, just checking in after having a wonderful weekend away in the Lake District.
Did me a world of good and it took my mind off my imminent CT results on Thursday! And funnily enough I didn't need any painkillers at all!
Hello to all the newbies, your in good hands here, lots of support, advice and also a good giggle too!
Hugs Janette xxx
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Hiya pippin
A fractured pelvis is very painful. When I was dx Oct 2015 ..the scan showed a cracked pelvis, hole in femur and hip like honeycomb! I was rushed in to have a femur nail put in to save it collapsing and to protect the hip.
18 months later and my latest scan shows bones recovering well and I'm driving, can manage "Next" sale and get around quite well with one single crutch. Hopefully with the help of denosumab ..the pelvis will mend and strengthen .
My oncologist said to eat as much dairy as possible to help bones too so I will probably die of a heart attack with all the cholesterol more than the cancer !!
Hugs xx
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Brilliant, really pleased for you Carolyn, long may it continue.

ramade xx

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Yes Pippin. My name is Susan (naughty name) nobody calls me that. I'm Sue and Suze was my dad's name for me. You're right about the 50s. There were seven Susans in my class! Shame you were denied reconstruction but glad to hear Letrozole doing its job.
I can get quite emotional at times and agree with you that it's not morbid to think about the end. Providing you don't get carried away. I work with so many children who have sorrow in the lives that it's hard not to cry sometimes. Pleased with myself for having a mini wardrobe sort out and about to go out. The sun's just appeared here. Take care everyone x
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Hi Carolyn

Yes, I should have thought of just saying "hip problems" will try that now! Like the comment about the vodkas though but no idea where that answer would lead!

Hi Suze

I take letrozole (no probs so far touch wood), denosumab, and calcium/vit D (also had radiotherapy and just before that mastectomy (for 2nd primary which is not responsible for the mets!) but denied reconstruction!!!!!). I am a bit further east than you, but I suspect our name is the same - something about being born in the 50's. Agree full time work is the key but with fractured pelvis I thought it a step too far!!!

 

I cried this morning, v.v. unusual for me: I was watching the short video of the 12 year-old would-be funeral director on the BBC front page on my PC. Not sad tears but you know when something touches a heart string. I was thinking how it would be for my kids to talk with someone so young about practicalities. I know I am unusual in not thinking these things are morbid.

 

Pippin

 

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Hi all thanks for your kind words they are much appreciated. I am working full time and intend to carry on as long as I can as it helps keep things normal although for the next few weeks I am off recovering. As for festivals I went to wireless and can recommend especially the Bacardi tent
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Hi B. I did look at side effects yesterday because I had indigestion. They're similar to extremesine which I had after Tamoxifen. I struggled with Tamoxifen as very nauseous but wasn't too bad on extremesine. The aches and pains are horrible and I have to keep reminding myself that they're probably just that aches and pains. I have scoliosis as well so some of it is posture. I have to keep straightening myself. Good to hear from you. S x

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Hi Wendy. It's scary but there's a lot of support. I alternative between positive and weepy moments. I'm back in school tomorrow and generally hit the ground running as soon as I arrive so being busy should help. I'm not going to be a martyr though. Ill stay off if I'm ill. I had my reconstruction eight years ago and glad I did as it helps me feel shapely. I have friends who decided against it and I understand why. Cancer has no respect and it is what it is. We just have to find why's to outwit it. 

Pippin, we have so many similarities. Yes state pension at 66 and I will be claiming it. We're going to Carfest. As I'm 60 this year (and I mistakenly thought 10 years clear) I've been doing 60 things I've never done before. The festival is one of them. What meds are you on? I'm finding waiting for more test results is bad especially as I'm very impatient.

Carolyn, I love your SOH. That's just the kind of thing I'd say. 

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Hi Suz, I'm sorry you've had to join us here but you sound very positive and going to a music festival sounds great, You said you hadn't read about the side effects of letrozole but if you start getting new aches and pains it might account for some of them. I don't take it but I take exemestane which has similar though perhaps not as severe side effects. The aches and pains spook me from time to time but often turn out not to be C

Hugs B xx

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Hello pippin
Like you I use a crutch when out and about ( walking stick not enough) people often ask and I say " hip problems" .it's too much to explain.
Maybe we ought to reply with something silly like ..drunk so much vodka earlier ..can't stand up or its to save wear and tear on our shoes !!
But as least we are still mobile and I'm driving again now ..
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Hello Wendy
Welcome to the forum and what a shock for you ...but we are all here to support and offer kindness.
It's a very cruel disease as for many ladies it hits just as we have raised our kids and were looking forward to some ME time etc.
But life if life and we cope.
Xxx
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Hi everyone I am recently diagnosed too. I am 51 and straight in at secondary stage discovered via investigation into hip pain. Still really angry and scared but I have already had radiotherapy which I hope will work and masectomy/recon last week. Reading your posts gives me hope as I cry every day although my husband and kids keep telling me I will be around for years it is better for me to know that there are others I can talk to. Hope you don't mind another new member. Wendy
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Hi Everyone

Wondered if anyone had any ideas on what I should saw in the following scenario (hich is very common for me);

I limp arround using one of my crutches (I find I get on better with this than a stick) and when someone offers help eg carrying heavy shopping I accept. Gobby by nature we usually chat and invariably they ask what have you done. Also honest by nature I say my breast cancer has spread to my hip, I know this makes people feel a bit bad because they apologise, I say it is "OK" and I say "I don't know what to say when people ask me". I am getting a bit fed up of this scenario - any ideas.

Hi Suze, I too had surprise bone recurrence on a scan (three years after first primary), working when got diagnosis too. Hoping to get back to work. Got 3 kids, live in the North and am 59! Isn't our state retirement age 66 now? Not doing any special things except eating chocolate again which I had entirely given up before and also I have no qualms about having a drink on my own even mid morning if I want, something I would neer have done before. I have thought about the music festival though (never been to one before) but when I took my daughter a couple of years ago I was tempted (but didn't tell her). Are you going to Leeds?

Pippin

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Thank you for your welcome and to Ramade. I've been out and about today but still find the devil on my shoulder telling me every little ache and pain is something sinister. I know I have to keep busy until I'm given more info. I teach primary which is tiring and stressful. Hoping to complete one more year before retiring. I have so many plans and this wasn't one of them. You're right, I feel cheated. I've worked since I was 16, even when I had my three children and studied to teach. I'm going to do my extreme best to get that state pension! If there's a mountain in the way, I'll either walk round or climb. On a more positive note, I'm going to my first ever music festival in July, so I've booked a mobility scooter to make sure I can get round. I'm busy thinking of ways to pimp it up now. I will keep on this forum because it's given me hope and made me smile. I want to join the stable Mabels too. 

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Hello suze
Welcome to the forum ..it's always nice to have new ladies join us and you will find a lot of advice and kindness here ..especially if you are having a bad day ( which we all do)

Once you find your way around the threads you will find so much info from real people .
I'm a little older at 64 but had retired a year before the little blighters started partying in my bones so feel cheated out of all the things I planned to do after working all my life !!
I had primary 2004 ..and eleven clear happy years so mustnt complain too much.
Anyway ..feel free to let off steam here ..we all understand how you are feeling now.
Xxxxx
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suze, you came to just the right place. welcome. ask all the questions you like here. great you've got a lovely consultant. i had letrozole for 5 years for chest mets, which oddly spread to neck. recently diagnosed with spine mets top and miiddle(pain in shoulder) now on exestamane, demosumab and to start everolimus in 3days. i find everyone has an awful few weeks when you learn of a new spread but then settle down. As for letrozole, i was fine for 6 months, then fatigue kicked in which i changed my life slightly to accommodate. when i was taken off it because it stopped working i had my energy back in 4 days. hope this helps.

ramade xx

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Hi. I'm replying to this thread because I can't find a way to join in. Hope that's ok. 

I found my breast lump on my fiftieth birthday. I never felt it again. The consultant said it was well hidden and I was lucky to find it. I had full mastectomy and reconstruction, chemo, radiotherapy, tamoxifen and +Zolodex. I finished my treatment three years ago. I was to be discharged in February but had a pain in my knee. My lovely consultant sent me for a bone scan because she knew I was worried and I lost my mum to B.C. three years ago.

Unlike me, mum didn't tell anyone and by the time the cancer was found it was too late. It shocked me how quickly it spread. 

Now, here I am with two bone mets on my spine and waiting for a further scan to check the bastard disease isn't anywhere else.

Again, I've been 'lucky' because the consultant wasn't expecting to find anything.

I've read your posts and I am a strong, positive lady usually so I would like to join in. She started me on Letrozole and I purposefully haven't looked at the side effects because I always get them bad. The pain along my left leg is permanent and stopping me from doing what I want to do. It's my 60th this year and I'd planned to be ten years clear and I'm currently doing 60 things I've never done before.

Trying to stay positive and I know there's an army of drugs. I also know I have the Christie on my doorstep but I feel in limbo waiting to find out what happens next and instead of looking forward to my retirement next summer, I'm wondering can I carry on working. I did go into work, the day after my diagnosis so quite proud of myself. 

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Hiya Chris
That's good news confirmed by oncologist ..unfortunate about the crumbling spine ..is that cancer related or just wear and tear?
I always find denosumab increases my back ache and bone pain for a few days ..it's normally about ten days after the jab ....I think I'm just unlucky though as most ladies here don't have any problems. I always think of it as Popeye having his spinach but ours is for the bones !!
Love to ladybird xxx
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Morning ladies.
We saw the onc yesterday and he confirmed the good results we were informed of last week.
I asked him about different brands of Letrozole and he was very dismissive of any change. He said her leg and joint pain was due to her crumbling spine. He even pointed to her swollen finger joints (which she has never complained about!).
No sign of dry scalp though Janette ....luckily.
Anyway we await the Denosumab injection from the nurse on Tuesday. Perhaps she might suggest something for the leg pain.
Keep smiling!
Chris x
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Hiya Jeanette
I've always got a dry itchy scalp too ..I don't risk any hair colour so am an old grey bag lady these days !! I only wash my hair weekly too !! It's definately letrozole causing it but just glad to have hair as a lot of poor ladies don't with chemo !!
Enjoy your special weekend ..hopefully this won't cause too much hassle and spoil things for you.
Hugs xxxx
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Hi ladies, hope your all keeping well.
I posted a few weeks ago about my dry /itchy scalp, well it has now got infected too so on antibiotics now and been given Alphosyl shampoo and ketoconazole shampoo to use alternatively.
I'm convinced it's down to my hormone treatment because I have never had trouble before starting on it.
Hope you all enjoy the bank holiday weekend.
Hugs Janette xxx
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Carolyn, Yes it has been that long! I am hoping these new drugs will be easier on my knees and I hope they don't mess with my weight loss! I don't want to gain again. I'm pleased with the weight loss and now 9 months of exercising! I exercise 7 days a week. I have taken a few days off but not many. When I started I couldn't even hardly do 1 sit-up. I now do 35 a day! Never in my life could I do that many every day!

 

Ramade, Will be very interested in how you do on this combo. My pills are arriving today, but don't start til the 8th. We got this! We will get each other through this!! I leave tomorrow for the beach and will be home next Thursday. Not sure if I will get to check in!

 

Have a good week everyone! FF

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good morning all you lovely brave ladies. Bit tired today, thought we had burglars in the night but it was the cat tearing my new cheeseplant to pieces. my fault, i shouldn't have bought it, should have left it in the 1970's.

Anyway, i was reading about diet helping, no read on, this is eating more not less... Breakfast porridge oats with sesame seeds and flaxseeds sprinkled on, these are supposed to act like pacman eating up cancer cells. lunch very slightly boiled broccoli and oily fish(sardines or somthing). Chewing on liquorice root a lot, supposed to cut estrogen. Still eat everything else as usual of course.

Everolimus being added to the rest next Thursday so will give a blow by blow account for anyone interested..ff?

hugs to all

Ramade

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FF
Gosh was it really a year ago you lost your brother ..time flies by.
Well u certainly are the matriarch with chemo treatments you have had ...so you are the wise owl here!!
I hope you have a lovely anniversary holiday this year and also a rest from ibrance/ letrozole too ...hopefully e and e will be kinder to your poor knees and who knows you might be running the new York marathon soon now !!!
Xxxx
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Chris....could be either drug, but please, please shop around for the Letro by sandoz...to try it before ditching it...so many ladies have come off it and found bc got resistant...its a really effective drug and could keep bc away for years for some people. Yes chat to onc.

 

raise your feet higher than you bum whenever you can when sitting down...

 

good luckxx

 

Moijanx

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Well, I did revisit letro...but bc now resistentxx

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Hi FF Enjoy your rest, have a good break, happy anniversary and, when you get back, I hope your new treatment is kind to you.

B xx

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Carolyn, I was sure I talked about it in the beginning. Yes it was horrible! Especially the first 6 months. I still sometimes have extremely bad days, but not every day. I'm sad that another treatment has failed, but also relieved. I was supposed to finish my treatment next Sunday the 29th and have one week off and then start the new treatment. I decided yesterday that I wasn't doing the last week. That I was taking an extra week off before I start. Giving my body an extra week rest! Feel like I need it. I have now had vinorelbine, capecitabine, gemcitabine, letrozole/ibrance all fail. I also took abraxane/avastin and it was stopped bc they were harsh on me, but they said I could go back to it bc it was still working. Saving it for when I'm desperate for a treatment!! Starting to worry about running out of treatments. FF

 

Oops forgot to say, my hair is thinner too and breaks like crazy. Wish you could see the wild tangled bed head I wakeup with! I will have to take a picture and post it. It will give you a fright and a good laugh.

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FF
Its only the last few weeks I have heard you really admit about the pain from letrozole ..obviously as its finishing you are banging those pans in celebration !!
I just don't know with myself as I have extensive bone Mets any way ...so it could be those little blighters, the letrozole or even denosumab ....and a bit of old age wear and tear thrown in ..I do know for definate my hair has thinned ..if it continues I might have to do one of those partings that old men do when they have a bald spot ...ha ha .
Just as well we can laugh at times ladies
☺☺☺☺
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Ramade, That is true of chemo, but I don't know about hormonal. I don't know how long you have to wait in between, and how well the drug might work the second time. I know I would like to revisit vinorelbine. It was easy for me, I was getting it every other week, and it worked for 5 years. Just wish the USA had the oral form! 

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Chris, Letrozole has caused me terrible joint pain. One knee was worse th an the other. I even tried crutches for relief, but my arms ended up with huge really nasty bruises. Figured I would just hobble. My legs also really hurt below my knees in my tibias. They did calm down some after about 6 months. From a 10+ with tears fling down my face every time I had to stand up to about an eight. On work days I have to take 5mg of oxycodone and 3 advil to get thru 4 hours of work. I also take this if I'm going to be out walking a lot. I talked myself through each and every month of taking it. Letrozole also cause depression. Sorry I'm so long winded. Now, get your shoes on and go get yiur lovely wife some chocolates.

 

 

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Hello ramade
That is a very good question about revisiting hormones and I don't have the answers but if letrozole worked for 5 years ...ifs its been "rested" ...than in my stupid head surely it could rework again ????
But u r going on a good treatment as e and e has produced good results .
I did tamox and anastrozole for five years at primary stage and would hope I could revisit them once letrozole gives up on me ...
Xxxx
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Hello Chris
Poor ladybird ..disaster has struck running out of Easter eggs ..maybe Tesco have a half price sale and u could refill her supply!
Hugs to you both as usual xxx
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Wow! Thanks ladies for your speedy replies.
We see the onc at Christie this week so we'll see if he can help suggest alternatives. Although if the drugs are working I guess it would be foolish to try others.
Ladybird's not a happy bunny at the moment. She has depression, problems after cataract surgery, hearing loss, pains in her legs, swollen feet and has eaten all her Easter eggs!
Keep smiling.
Chris xx
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hi all, now here's a question! letrozole worked for me for 5 years, now it doesn't so i have to go on e\e. i'm sure

someone told me you can revisit drugs again if it's been a while, and that they might work again. has anyone else heard this?

hugs to all,

ramade

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I concur with the others about Letro. Two points tho 1/ if it's working then try to keep going on it if you can, it worked for about 7 years for me ... but when I stopped the bc came back and is now resistant to it .... tablets are far nicer than needing I've chemo if you can avoid that.... and you are far more free to track and do your own thing. 2/ I was on the original trial with the first form of Letro .... I had fewer side effects on it ...... the company has marketed a cheaper version which is exactly the same drug.... by Sandoz. Ask the pharmacy to get you that one .... see if the s/e are less as these days the pharmacies tend to buy the cheapest. Version of the drug* ..that month....to maintain their profits .many of which* are mixed with different preservatives etc... some of which can add to side effects. Boots used to be able to get the Sandoz version..... if you can't get it, shop around and try some if the others... see if one gives you less s/e


Moijanxx